This disease, this… this thing! It’s taken away my ability to travel. Not physically. No. It’s not one of those diseases. I can function as the privileged, abled human being that I am. The only difference is I drag my heart around in a box on wheels, that includes a compressor and pump, with two batteries.
I’ve met other people with the same condition and attachment, some more and some less abled, and I know I’m seen and counted as one of the lucky ones. I’m one among the few that got a second chance because I made it through the artificial heart surgery.
When you carry your heart in a mechanical box on wheels, and people tell you ‘you look good for someone with heart disease’, what can you say? What exactly did they expect? Did they expect me to share a tale of woe with every human being I meet?
On the outside, I’ve lost a lot of weight – the water retention that goes hand in hand with this condition had me bloated like a balloon. I probably smile more and laugh lots when I’m out and about. If you ask, I will talk about my failing heart and the condition, as well as probably give you loads of info you didn’t know – I mean, did you know that one fucked up virus could exhaust your system so much that you’d need heart medication? Neither did I, until it happened to me.
I keep getting told I was lucky my body lasted as long as it did. My heart was on the verge of giving out when I went to a doctor who sussed what was wrong. Prior diagnosis by a different doctor had focused on a symptom – the inability to digest or eat anything. He kept insisting I take more pills to cure acid reflux I didn’t have. I guess I am lucky; lucky to be alive considering I had no idea about the severity of the condition.
As an otherwise healthy, abled 26-year-old, myocarditis isn’t exactly a word you expect to hear from a doctor. Not that you’d know what it means at first.
Here, it falls under the ‘cripple’ or ‘disabled’ category, and somehow the words are always used in the most pejorative manner. You’re meant to either feel sorry for the people with disabilities (usually the visible ones, as far as I can tell) or you’re meant to feel inspired and in awe of them for managing to go about their day at all. It’s a load of bollocks. This incredible need for people to pity and/or patronise someone who isn’t abled in the traditional sense of the word, pisses me off big time. I can get dressed by myself, I can make a meal (if I’m really bothered to) by myself, I can keep my room tidy by myself (again, my innate laziness often prevails, but that’s not the point!). Just because I’m not allowed to be left alone for a long duration of time (in case the machine breaks down) doesn’t mean I need you to stand over me like a fucking guardian.
I mean… I’m still me, right?
Admittedly, I thought it wouldn’t change me. But I can’t function like I used to. Obviously, partly because I have to lug around an 18 to 20 kg ‘heart’. But also, I can’t do what I used to. Tonight we were planning on going to the movies, and my major concern related to the noise my ‘heart’ makes. By now, I barely notice it, but I’m certain film-goers or theatre-goers would definitely be irritated.
Actually, that’s where I was wrong. I thought persisting against the downward spiral that comes with this disease would mean I don’t really change much. I thought it would mean I get to go back to ‘me’ and my lifestyle when I get a transplant and get out of here. All I would have to do was take a few extra pills, and be careful about sanitation and personal hygiene. But I was wrong… so wrong.
Aside from the physical dimension of getting around, I realised this fucking disease – that I am now determined to beat into the ground – has gifted me with a terrible dark passenger: the Fear. It’s not something I can justify or quantify; I don’t even know when it happened. But it did. I can’t roam and rove carefree like I did before; there’s rules and regulations and things I have to consider before I go somewhere. I’m not talking about ramps and shit… although they (or their absence) are quite a problem of their own. I’m talking about the fear of being in a crowd for fear of catching something – even the simplest cold.
Me! The fellow who used to thrive on Fringe frenzy and festival-going in Scotland. Afraid of being in a crowd!! Who’d have thunk it?
Still, I reckon I’m doing better than the guy who didn’t leave the house for two years because he was so scared of e-v-e-r-y-t-h-i-n-g.
Yet now, I think twice. And I’m not a hypochondriac. I go out whenever I can, instead opting for excitable caution. Caution which I’ve realised I won’t be able to shrug off after a transplant. Then, I’m supposed to be doubly cautious about being around people and circulating in public spaces.
This is ridiculous… they’re fucking public spaces! Why shouldn’t I be able – or even entitled – to go out when I want to? (Childish argument, I know) The rage boils hot like lava sometimes.
I hate the Fear.
Oh, and the ‘best’ advice for this situation? Be patient.